A blog about Central Pain Syndrome, commonly referrred to as CPS. Written by a patient who has acquired it as the result of a thalamic stroke, it is intended to be a site for discussion of its symptoms, its causes, its horros, its treatments (or lack thereof), and a personal journal of my own attempts to understand and ameliorate a life lived in the constant burning of the fires of Hell.

Risk Reduction

June 12, 2013

Back in the Ancient Times, when I was a young feminist in a conservative all-girl Catholic high school, Erica Jong became an overnight success with “Fear of Flying.” It captured the zeitgeist! Well, if Isadora Wing were to tell the story of herself and her contemporaries today, capturing the spirit of *their* age, it would be called “Fear of Falling.” (I’m not the first person to have made the connection.) The generation of men and women that were in their 30s in 1973- Isadora’s cohort – are now in their 70s, and are all prone to the dangerous and debilitating falls of the weak and unsteady.

But I might as well have been in my 70s, because of balance problems and muscle weakness post-stroke. I have fallen again, at least twice, since writing about my fall down the stairs. Late nights and the kick-in of my “midnight” prescriptions make sure that I sleep, but they also make me prone to tumbles. These are really “falls”, so much as buckling legs that give out under me because of the muscle relaxers prescriptions, combined with fatigue. One that I incurred in February was not very bad; i was able to keep my head from hitting anything. But one collapse, approximately two weeks ago. really scared and injured me. I got up from my desk feeling perfectly alert, if tired. The next thing that I remember is lying on the floor with my left leg folded under me and a very achy sport on the left side of my head. My fall had been broken by some storage boxes, so it wasn’t as bad as it *could* have been. (I might have smashed into the exercise bike.) Nonetheless, I had re-torn my left hamstring, and given myself a concussion. As I realized what had occurred – the full ramifications of which took a few days – I was terrified. I envisioned an possible life comprised of more and more collapses of greater pain and injury. I imagined my brain covered with large bruised and non-functioning patches resulting from direct and contre-coup blows.

The week following, I hobbled around on crutches and slept twice as much and made a lot of typos. But I also considered how I could control and reduce both the risk of falling, and the damage that a fall might do. Obviously, the commonsense advice of de-cluttering one’s environment was completely pertinent, if very tough to do. But the biggest issue – literally – was my weight. I knew that the less weight I had to deal with, both the more nimble I would become, and the less damage I would do.

I haven’t talked about my weight here – no woman wants to confess their weight issues in public. They attempt to hide their weight as much as they can – whether with Spanx, tunics, or headshots.I had always been thin, and when I got married, I was working at a job that kept me on my feet and physically active all day. After returning to school, I put on ten pounds. When I became pregnant, I put on 25 pounds – and after Jake was born, I was left with 18 of the baby weight, and general weariness. It turned out I had developed an auto-immune thyroid disease during pregnancy (relatively common) but it made my weight continue to spiral. When we moved in 2003, I weighed 185 pounds, although I lost 10 while working on fixing the house. 175 was the lowest weight I have been in ten years. A little less than four years later, I had the stroke, and was left weak and often simply sitting in a chair for almost the whole day. At my heaviest, after Kingmas 2011, I tipped the scales at 215, 80 pounds more than I weighed when I came back from my honeymoon. Only if you have suffered a weight problem such as this can you understand my existential shame and horror.

215 was, of course, a Kingmas aberration, our family’s holiday in which fattening foods and sweets are shared. So I lost ten pounds the next month.. But I realized that I had been trying to control my weight all by myself for at least 20 years, and it wasn’t working. It’s not that I wasn’t motivated. It wasn’t that I didn’t know the facts about nutrition. It wasn’t even that I wasn’t disciplined. But I ha an addiction to simple carbohydrates, which grew worse at night as the CPS pain grew more exhausting. Mainly, though, it was because I was alone, in a house where no one really was interested inc changing the way they ate. I realized that whatever I had been doing wasn’t working. I joined Weight Watchers.

The meetings I attend are on Sunday mornings, and sometimes it feels like a Unitarian meeting. Men and women, from the-people who are 100+ pounds overweight, to the slender marathon runners who have been “at maintenance” for years, all gather to share their stories, the battles, their victories (“bravos”) and their failures. It is tehe one safe place where we can actually talk out loud about the pressures of being overweight in a culture that praises and overwhelms us with the images of the very thin.We are attempting to change out eating habits from the standard American diet of heavily subsidized corn, sugar, wheat and fatty meat to one based on lean protein, produce, and whole grains. The marketing of thinness, combined with the national financial support and heavy advertising of foods that make you fat and ill, can leave a person whiplashed. But at least there is one time a week when we can talk about that schizophrenia in our culture.

Of course, I have an additional problem, in that my prescription medication are know to put on the pounds. A good many of our members have quit gabapentin or Lyrica, even if it gave them some relief, because it caused them to gain as much as 30 pounds. I had found that my gabapentin made it more *difficult* to lose, but at least didn’t make me heavier. I knew that I had done that on my own. How? Why, the notorious “White Foods,” of course – flour, sugar, rice -and sweeteners of all types, have both an addictive and a wicked effect on me. Even though I lost 10% of my body weight by going to meetings and tracking what I ate, I was still yo-yoing up and down between 190 and 185.

Falling two months but the fear of my own mortality into me. The examples of my parents showed me what my present course was leading to. I knew that I had to get rid of the extra weight, and make myself strong. If that means cutting out all sugar, or all American wheat products, so be it. I’ve done that. I’m at my lowest weight in 10 years. But the difference it has made in my balance and agility is the payoff. The less weight I have to maneuver, the easier it becomes. That, of course, leads to more activity, which makes me stronger and more flexible. At the meeting this past Sunday, a woman who had lost 50 pounds was carrying her “reminder” – a satchel filled with 20 lbs of pennies. It was difficult for me to even pick up the dead weight. Every 20 pounds that I lose is one less dead weight baggage. “Dead” weight is what it is.

Death can come upon us in so many forms, swiftly and unexpectedly, after a long struggle with illness, or slowly creeping up as we sink into the lassitude of an exhausted old age. Perhaps my end will be as sudden as a misstep, a stumble, and a blow to the head. But I can reduce the risk of that conclusion by altering the equation.

Isn’t that what reducing risk is all about? We theoretically purchase insurance (if we can get it) to reduce the *harm* that would be caused by injury. We also reduce our risks of car accidents by cautious, alert driving, or of cirrhosis by eschewing too much alcohol, or of lung cancer and emphysema by avoiding cigarette smoke. We can reduce our chances of slip-and-falls by removing items that might trip us. But how can an everyday person reduce their chances of developing Central Pain Syndrome? Its visitation upon humans seems purely arbitrary. There may be professions in which you may be more prone to developing the injuries that cause CPS – such as military service or playing professional sports. We could make those safer, or at least inform those involved of the risks.

Ultimately, though, we do not know enough about CPS right now to even treat it effectively, much less cure it or prevent it. That is why we in the CPS community, and I personally, must work on both strengthening and protecting ourselves from further injury. Most of all, there is a responsibility for those of us who know this pain, and can still function and communicate, to tell the unknowing or oblivious about this disease, its etiologies, its present treatments, and the demand for research. Forewarned is forearmed. It’s the reason we listen to traffic reports – so we can plan a safe and efficient path to our destinations, and arrive there whole and happy.